Oh the way those PANS/PANDAS parents talk about their children’s illness get my hackles fucking raised. It’s like every “autism mom” I’ve ever heard talk. I’m not even writing off the idea that there may be cases in which an infection leads to an autoimmune response that causes neurological mental health changes in children. I can totally conceive of that being a thing we don’t totally understand yet. But the way these people approach it…. God. I know it’s got to be terrifying for parents if their kid suddenly develops OCD, ED, and/or tourette’s symptoms, but the scientific data is so severely lacking, and the language these parents use to talk about those experiences is. Very specific.

The proposed biological indicators for PANS are often present in people without the disorder, without any of the related symptoms. The current proposed diagnostic criteria is extremely generalized and doesn’t very rigorously provide ways to rule out differential diagnoses.

The proposed treatments of long term antibiotics and steroid usage can have dangerous side effects and extreme consequences.

But there are thousands of parents online who will insist it’s 100% real, it’s an epidemic, and they’ll use their numbers to attack anyone online who disagrees with them. Some of these kids may have symptoms that did genuinely arise because of an autoimmune response linked to infection. I wouldn’t write it off. Further scientific study is clearly needed. But it’s also just as likely to me that there are parents out there that just refuse to accept that their kid could be mentally ill for no single curable reason.

I say this as someone who, themselves, developed severe mental illness as a very young child. It’s possible your kid just does have trauma, just does have ocd, just does have depression, just does have tourettes. But these parents see their kids “suddenly” present symptoms and insist on correlating it with extremely common childhood infections. And then manage to find some medical professional somewhere who will actually agree to put their kid on long term antibiotics, and insist their kid’s mental illness just totally went away afterward!

And like. Sorry. But there’s no way for me to hear that and not be reminded of the parents who think red dye makes ADHD worse. Or the parents who think their children’s autism is caused by intestinal parasites, and insist that since they started making their kid drink a bleach solution they bought online their autism has “improved.” The science is inconclusive, everywhere you look there’s confirmation bias, and also.

Every time I hear parents talk about this, not one of them mentions how their child felt about their experience. It’s always “they developed all these tics and compulsions, they wouldn’t eat, they were paranoid, they became suicidal, it was SO scary and hard for me!” and it’s like. As someone who was once a very mentally ill child. Why do every single one of you fail to address this. They seem more concerned about how “scary” it is and how “different” their child has become than their child’s own internal experience of suffering.